AA Diet Info for SMA

Based on Families Experience

Krista’s Testimonial

My daughter, Krista, was diagnosed with SMA type 2 at 8 months. She never crawled, or walked and could only sit with support. I always had concerns about her nutrition and tried many different supplements and formulas. The one thing that always stood out in my mind was how quickly her strength deteriorated when I stopped breastfeeding and put her on dairy and soy formulas. Her next five years were filled with loss of strength and a lot of respiratory illness that resulted in numerous hospitalizations, despite very aggressive pulmonary care.

When Krista turned 5, a G.I. doctor suggested that we replace her milk based diet with an elemental formula. Within two weeks of making this change, Krista was a completely different child. Over the next several months, she had significant strength gains, dramatically improved g.i. health, and was staying healthy. Colds were no longer turning into complicated respiratory illness. Since then, Krista has never been back to the hospital during respiratory illness.

As we watched this incredible improvement, I knew I had to educate myself on nutrition and see if I could further improve her diet. It was difficult to find any guidance, because we were in unchartered territory. A knowledgeable biochemist helped me have a better understanding of the metabolic issues involved in a muscle wasting disease. He also advised me on labs that would be useful for making sure that Krista was receiving adequate nutrition. There was a lot of trial and error. I started adding additional supplements and went through a process of eliminating and adding in foods to watch for changes.

After several months, I started discussing Krista’s new diet with other SMA families. Many parents were interested and started their children on the diet. All of the children, type 1 and 2, showed improvements.

We changed Krista’s diet more than 16 years ago. Based on her level of SMA and the struggles she went through her first five years, we never imagined that she would be so well and stable. We absolutely attribute her quality of life to this diet. That’s the reason we have never stopped talking about her diet and continue to encourage families to consider the AA diet as an option for their child with SMA.

This website explains the accurate amino acid diet for spinal muscular atrophy patients. For over 17 years, this diet has been used successfully in many SMA patients.Those following this diet appropriately are typically healthier and stronger than others similarly affected by SMA. Because this diet hasn't been studied by medical professionals, it is often not properly prescribed. I believe this is a disservice to SMA families striving to access all available care options for their children. This website has been established with the hope that more families can understand how to safely and optimally use this diet. Any information contained here is based on the opinion and experience of many families.